2018 has began…now what?

I start every year with the same hope and joy and by the end of the first week I wonder why I even tried to change things. However, this year I am trying a new approach instead of diving in I am taking my time starting my resolutions. I have realized that it is never a lack of effort but maybe the fact is that we are following the past into the same problems. So I am not starting anything new until at least February 1st or even later. What is the rush? I would rather start later and stay on course than start quicker and end up burning out. So good luck everyone if you started now or you are starting later. I wish you all the best for the rest of the new year. I will leave you with this quote “Just because the dates change, does not mean you have to change. The continuous path towards self-improvement is a timeless process.” ― Brittany Burgunder

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5 lessons I learned this year

This year has been life-changing for me. The events of this year will impact my life in a way unlike any other year in the past. As I reflect on the events of this year I am hopeful that next year will bring more peace, joy, and happiness. I learned a lot about myself and others this year. Some good things and some bad but all of the moments had value because of the lessons that I learned. I am going to reflect on 5 lessons that I learned this year that will better prepare me for 2018.

  1. Everyday armor is added to protect you from adversity.  I understand that many of us have trials and tribulations just to make it through the day but we are strong for the struggles we have on a daily basis. Instead of viewing the struggles as a burden try to view them as pieces of armor added daily to help with the daily struggles of chronic illness. The more armor you have the less those struggles can affect you the next time they occur.
  2. Finding what works for you is all that matters. I spent a lot of my time in the past trying and reading about what works best for others but this past year I focused on what worked best for me. Whether it was a lifestyle, health or relationship choice I made a conscious decision to find out how each aspect of my life was affecting my well being and spent my time removing those toxic elements from my life. This has dramatically changed my mood and outlook on life. I am more positive and have a better understanding of what works best for me on a daily basis and I have seen the benefits in all aspects of my life.
  3. Living in the moment is where peace is found. Meditation teaches that living in the present is what provides the contentment and calm that most of us are looking for in our daily life. Chronic illness causes additional anxiety that may cause us not to be in the moment all the time. However, appreciating the moments when you are feeling better than the normal chronic illness baseline is so important to living a fulfilled life and why those fleeting moments should be cherished and not ignored.
  4. Listen to your body. I spent this year truly listening to my body. I loved my body on the good days and the bad. I did not dwell on the bad days as much as I use to instead I respected that my body was having a bad day and needed special attention.  Just like any other relationship the one with your body is personal and you must listen and responded like you would to any other loving relationship in your life. You must give your body respect and be loving in order to receive the same from your body.
  5. Life is shorter than you think. I know we have heard this all our lives that life moves quickly and you must stop to smell the roses but I have a different theory. I think that if you are in the flow of your life and on the right path the smell of roses will be the fragrance of your life and would not require you to stop and smell them. I spent a lot of my life doing what I thought I was supposed to do versus what the universe was gently nudging me to do. This blog is something that is in the flow of my life and when I sit down to write it never feels like I need to appreciate it because I love it that why I do it. I found more things in my life that make me have the same joy I have from writing this blog.

So, as this year comes to an end I am hopeful that next year will bring new experiences and new lessons that will help me move forward in my life’s journey and I hope to share those experiences with you with the understanding that you are not alone in your struggles with chronic illness or just in life. Best wishes and Happy New Year! I will leave you with this quote “Tomorrow, is the first blank page of a 365-page book. Write a good one.” ― Brad Paisley

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The Hectic Holidays

I have always been a fan of the holiday season. Every year I look forward to the hustle and bustle of all things holiday but recently the holidays have become a source of anxiety. The holiday shift begins after Halloween with an increased number of people shopping, the pace people have is much faster and the changing weather which for me involves cold, snow and ice have become a concern for my physical safety. However, I can’t help but love this time of year. People are out with their families, friends, and others creating memories, some good and some bad for a lifetime. I feel like the holidays are a break from thinking about the tough day to day issues we all have to deal with in our lives. Even though I cannot experience it the way I did in the past, I still find joy in the new traditions that I have created to replace the ones my chronic illness will no longer allow me to participate in. As I move into the winter and holiday season, I am hopeful that things will go well and I am thankful and grateful to be able to the do the things mentally and physically for another year because next year I may not be so lucky. I will leave you with this quote “Cultivate the habit of being grateful for every good thing that comes to you, and to give thanks continuously. And because all things have contributed to your advancement, you should include all things in your gratitude.” ― Ralph Waldo Emerson

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The Misconception of Powering Through

I have been sick my entire life. Since I could remember I have heard people say you can do it just power through it. Now, I am a big believer in persistence but when it comes to certain areas of your life such as your health and well being this may not be the best course of action. As a person with a chronic illness, I have been told over and over that I am lazy, unmotived and pretty much a worthless human being. Unfortunately, I wish I was paraphrasing that last part but I am not. I was misdiagnosed when I was younger which gave everyone the impression that I was just not trying hard enough to get better but I was. I had scoliosis as part of my CMT and since I was overweight doctors told me that it was because I was overweight. I had so much stress as a kid because I was overweight but I found out that had nothing to do with it. Some types of CMT including mine cause scoliosis as well. I spent my life powering through and getting worse until one day I could not deny that something was very wrong and I got rediagnosed with a completely different disease.  Medical advances have allowed my diagnosis to be seen clearer than before. It was hard not understanding what was going on with me and it would have helped me immensely to know what disease I really had. I know that dwelling on the past does not help anyone especially me. I want to forward and to do so I learned that consistency at a level that is right for you is more important than powering through. I think that I have a lot to learn but I know a win for me is to keep trying and not powering through on something that will surely do harm to my well being. I will leave you with this quote “When you run your own race, don’t worry about the next person’s pace; mind yours, after all this is your own race not theirs.”
― Gift Gugu Mona

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Morning Fog

Somedays I wake up to what I describe as a morning fog. This fog is debilitating with speech, cognitive and motor skills that subpar at best. In addition, I have a higher amount of physical pain than I have on “normal” days. I try to be a fairly positive person about my disease but on those days, it is difficult to find the strength to do much of anything. It feels like my mind and body are in complete chaos and I have not yet found a way to recenter myself.  I also feel the emotional fears that come along with my disease. These days are little indicators that my disease may be getting worse rather than staying the same as I would hope. I struggle with the thoughts in my mind making the morning fog even foggier than before. This is a vicious circle for a person with my disease creating an endless loop of mental pollution and physical pain that becoming toxic to my being. Now, I am not saying that this will not pass but in that moment it is all I can think about because as much as I try to ignore the fact that I am really sick I promise you my mind, body, and soul remind me that I am not well. I write this post to hopefully strike a cord that may help you better understand what it is like for someone that has a chronic illness in hopes that it will help you help yourself or others that struggle to just get through the day. I will leave you with this quote “To find truth, one must traverse a dense fog” ― David Dweck

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Am I really getting a deal?

I am a person who likes to get a deal or so I thought. Am I really getting a deal or am I really get the benefits of the price I pay? I have been reviewing my life and monthly expenses and started to realize that some of the areas I saved on I needed to cancel because I was not using them. Now, this is not a breakthrough moment, if you don’t use it, cancel it. However, I wondering if the reason I was not using them is because I had gotten such a great deal that maybe I did not pay attention to whether I would pay more if it was the right fit for me. So, I discussed this with a few friends and concluded that many other people sacrificed their preferences for the price even if they could afford the higher priced service that would satisfy what they were looking for. I was surprised that other people along with myself continued to use a service that we disliked solely based on the “deal” we were getting. So, I started to examine things with a new perspective regarding products and services. I changed a few areas to different products or services that fit my needs the best and found that things that I had cancelled or not used, now were things that were used almost daily. I completely understand that many people including me look for the best deal but now I look at what is best for me and see if I can find a deal for that. I will leave you with this quote “The way to wealth is as plain as the way to market. It depends chiefly on two words, industry and frugality: that is, waste neither time nor money, but make the best use of both. Without industry and frugality nothing will do, and with them everything.”Benjamin Franklin

Being Comfortable With My Disabilities and Decisions

Denial is a powerful thing. I was in denial for almost 25 years that I was very sick. I made choices from a place of denial. My frustration came from that same place. The thought of me not being about to fix myself made me feel out of control. I tried for years to fix myself and when I could not I felt worse than before.  I recently made a big change in my life and after I made the decision and all aspects of it had been finalized I began to tell everyone in my life about what I decided. I was nervous because for me this was a life changing and difficult decision but when I told everyone they were relieved. I was surprised to find out that everyone was happy for me and felt I had made the right choice and wished I would have made it earlier in my life. I did not know that they felt the stress that I felt. After a few weeks of coming to terms with all that has happened over the last few months, I realized that being comfortable with yourself is a powerful thing and It’s effects may reach further than you could imagine. I am looking forward to being comfortable with myself from today on and I learned the best gift I can give to myself and everyone else is to be my true self and do what is best for me. I will leave you with this quote “The moment will arrive when you are comfortable with who you are, and what you are– bald or old or fat or poor, successful or struggling- when you don’t feel the need to apologize for anything or to deny anything. To be comfortable in your own skin is the beginning of strength.”Charles B. Handy

What is a Spoonie or The Spoon Theory?

I learned a new word this weekend for people that struggle with chronic illnesses such as myself. The word is Spoonie or Spoonies. At first, I thought that was a beautifully odd thing to have on your profile but I have friends that love Sporks so it did not seem unusual to me. Then, I became instantly curious about that the word might mean and started looking for all the information I could find about the Spoon Theory. So, a Spoonie is a person living with chronic illness, that identifies with Christine Miserandino’s Spoon Theory. Spoonies are people that live with chronic illness; theoretically measuring personal daily abilities much as one would measure the proper amount of spoons needed for an event or occasion… sometimes having an abundance, other times coming up short.  I really like this word and this theory, I think that sometimes it is really hard to explain what it is like to have a chronic illness. I found a youtube video from a while back that explains the spoon theory and how it became a symbol of chronic illnesses. I hope you can share this video or article with anyone in your life that has a chronic illness or family and friends that may need some help understanding your daily life with a chronic illness.  I think that is the Internet has become a great tool to express what it is like to live with a chronic illness. I hope you find this story inspiring and maybe you will write the next great story or chapter for chronic illness awareness.  I will leave you with this quote  “Start by doing what’s necessary; then do what’s possible, and suddenly you are doing the impossible.” -Francis of Assisi

This Week Sy Suggests – Happiness Tips

Every week I try a few new things so you do not have to. This week’s top five suggestions are from Gretchen Rubin and Elizabeth Craft’s Happier Podcast.  They have a bunch of suggestions to try at home. I am going to give you the 5 that I tried this week.

  1. Make the Bed – This seems like it’s a little thing but every day it can add to the day’s accomplishments.
  2. One Sentence Journal – I have always wanted to have a journal and I have tried all types methods from a set time to 2 mins day but the one sentence journal was a success for me this week.
  3. Meditation – This has been something I have talked about in prior posts but I will continue to make this suggestion. Even if it’s 5 minutes a day, I always notice the difference in myself.
  4. Stretching – I struggle with this daily but I am trying to stretch at least a few times a week.
  5. Happiness Demerits and Gold Stars – I like this concept because listening to the Happier Podcast has made me think about what I do poorly or well when it comes to my own and the people around me when it comes to happiness.

Happiness is something that requires daily practice. I have tried a lot of different things and some things work and some things do not work for me. The success is from trying to be happier on a daily basis. If you continue to try new things to be happy those little things add up over time. I am no happiness expert when it comes to living with Charcot Marie Tooth, Scoliosis or Stenosis but I know that trying new habits and suggestions will have a positive effect on your daily mood. Let me know if you have tried or are planning to try any of Gretchen Rubin’s suggestions in the comments below.

How My Blog About Charcot Marie Tooth and Scoliosis Has Helped Me

It been almost 3 months since I started this blog and I have learned a lot about myself and others that have both illnesses. I started this blog as a way to document someone living with CMT, Scoliosis and Stenosis and the tips I would find along the way but what I discovered was something completely different. I was inspired by the communities that are helping and supporting one another. The people I now follow, read, and learn from all came through me starting this blog. Also, writing a post about a subject made me look at the subject more objectively which has helped me discover causes for issues that have plagued since childhood. This blog has given me a way to express some aspects of my illnesses that I not been able to communicate so clearly. This has allowed people close to me and beyond a new perspective on what its like for me living with a chronic illness and what effects it has on my daily life. I have had people that have known me my whole life that did not know I was battling a chronic illness which was very surprising to me. So, I think that this proves that using this platform has been a good for awareness.  It a good thing for people to hear Charcot Marie Tooth, Scoliosis and Stenosis so if they hear it from someone else they may have some familiarity with subject or at least know someone that has it.  I am truly grateful and greatly appreciate all my social media followers, blog subscribers, family and friends that have taken the time to read my blog and I hope you will keep reading my posts and continue to follow me on this journey. Thank you so much. I will leave you with this quote “After nourishment, shelter and companionship, stories are the thing we need most in the world.”Philip Pullman